Our Autism/Asperger’s Journey…The Beginning
I wrote the following email over a year ago, shortly after we got the diagnosis for Emilia. Reading it today and knowing how far she has come makes me cry…I am so grateful that we had an early diagnosis and started her on therapy right away.
January 28th 2010
Our dearest family and friends,
I am hoping that this email finds you all happy and healthy, and settling in to the new year. With the devastating earthquake in Haiti fresh on our minds, I am sure that you have all been reminded (once again) of how fragile life is, and are holding those dearest to you even closer than before, while remembering to live the best life that you can for yourselves, your families, and mostly, for humanity…
Ray and I are trying to stay focused on the bigger picture as we struggle to clear through the rubble of our own proverbial earthquake last week. After having some concerns over Mimi’s development and with the encouragement of a friend who worked with preschool children that also saw the same “red flag” behaviors- in particular her lack of eye contact and difficulty in engaging her socially, we brought her to see one of the top pediatric neurologists here in South Florida who diagnosed her with ASD- “Autism Spectrum Disorder”, more specifically, “Asperger Syndrome” which is also known as high-functioning autism.
I’m sure many of you who have “watched” Mimi grow up through my emails, videos, and pictures are wondering how such a healthy, happy, and smart little girl who began reading at 20 months and knows her US map, how to use a computer and iphone, can be diagnosed with autism. To better understand, here are relevant parts of the explanation of Autism and Asperger Syndrome from the University of Miami’s Center for Autism Related Disorders (UM-CARD):
What is Autism?
Autism is a lifelong neurological disability that affects a person’s ability to communicate, understand language, play and socially interact with others. The ﬁrst signs of autism usually appear as developmental delays before age three.
Autism is classiﬁed as a developmental disability because it interferes with the typical rate and patterns of childhood development.
There are diagnoses closely related to autism such as PDD-NOS (pervasive development disorder not otherwise speciﬁed), Asperger’s syndrome, and Rett’s syndrome that are included in the category of Autism Spectrum Disorder.
Every person with autism is different. However, there are some common characteristics of individuals with autism that may occur.
Remember that although these are some common characteristics no two persons with autism experience the world or behave in the same way.
- Difﬁculty in using and understanding language. Some children develop typical speech patterns until age two.
- Poorly developed social skills and unusual play with toys.
- Over or under sensitivity to sound, sight, taste, touch, or smell.
- Repetitive behaviors such as spinning objects or rocking.
- Certain behaviors exhibited to stimulate the senses, such as switching a light on and off repeatedly, or humming loudly.
- Difﬁculty with changes to surroundings or routines.
- Very high levels of activity for long periods of time.
- Uneven skill development. Some skills are normal or superior for their age while others show signiﬁcant delay.
- Challenging behaviors such as aggression, self injury or severe withdrawal.
Nobody knows what causes autism. Some scientists believe there is a biological cause that affects the working of the brain, but this has not been proven. It is possible there are many factors that could interact with one another which could cause different characteristics in each individual with autism.
Parents do not cause autism. No factors in a child’s experiences or in parenting styles are responsible for autism.
According to the Autism Society of America, Autism Spectrum Disorder occurs in about 1 of every 500 births, and four times more often in boys than girls. Families of all racial, ethnic and social backgrounds anywhere in the world are affected.
Autism occurs by itself, with mental retardation, or with other health problems, such as epilepsy, viral infections, or changes in a person’s growth rate or metabolism.
Less than 5 percent of persons with autism exhibit the genius-like abilities like Dustin Hoffman portrayed in “Rain Man.”
What is Asperger Syndrome?
Asperger Syndrome (AS) is considered a pervasive developmental disorder at the higher functioning end of the autism spectrum. It is characterized by sustained impairment in social interaction and the development of restricted, repetitive patterns of behavior, interests and activities. In contrast to autism, there are no obvious delays in language or cognitive development, or in age-appropriate self-help skills and adaptive behaviors though there are subtle impairments.
Unlike most people with autism, individuals with Asperger syndrome experience no delay in the onset of speech. In fact, their speech tends to be formal, pedantic and long-winded. Persons with AS often have monotonous vocal intonation and limited use of gestures. They may have difﬁculty comprehending other people’s expressions, gestures and non-literal statements. Therefore, individuals with Asperger syndrome usually do not understand jokes, irony and metaphors.
Many individuals with AS want to develop friendships and interact with their peers, but lack the ability to understand and use rules governing social behavior. They have difﬁculty using and interpreting gestures, judging proximity to others, and maintaining eye contact, all of which may impede the development of personal relationships.
The social behavior of persons with AS tends to be naive and peculiar and movement is likely to be awkward and clumsy. Because of an intense interest in one or two topics, the individual with Asperger syndrome may talk at people instead of to people, disregarding the listener’s interest or attention.
Although individuals with AS may make efforts to socially interact with others, their unusual manner may leave many people not knowing how to respond. The person with Asperger syndrome may then be left misunderstood and isolated.
Special Skills and Interests
Individuals with Asperger syndrome often have average to above average intelligence. They tend to possess excellent abstract thinking abilities and rote memory skills. One characteristic unique to AS is an intense interest in one or two subjects to the exclusion of all others. Many times individuals with AS are respected for their unusual abilities, and due to their extensive knowledge of certain topics or activities may be regarded as “eccentric.” The individual’s single-minded pursuit of his or her interest can lead to great achievements later on in academic and professional life.
Associated Features and Disorders
Parental reports of early development may reveal that motor milestones were delayed and motor clumsiness is often observed in persons with Asperger syndrome. An uneven proﬁle of skills, attention deﬁcits and cognitive disorganization may also be key features of individuals with AS.
I started to have some concerns about Mimi last year, just before she started to read. Having Samantha, who would stare into my soul while nursing was an experience so different from Mimi, who I chalked up to being “all business” when she had nursed and never made eye contact. Emilia also seemed to be indifferent to Samantha’s presence, but I just figured that was a normal part of her adjusting to a new sibling. On play-dates, she wouldn’t engage with the other children- I wondered if she was just shy, because she would play alongside them- “parallel play”, and that was normal for her age. She had some repetitive behaviors, like circling the couch and focusing on the fabric’s texture as it whizzed by. I talked to her doctor about it, and asked if there was any way to get her evaluated in our home so as to not put her through the stress of a clinical situation. She said that there was no program here in Florida that would facilitate that, and suggested that if we were really concerned, we take her to Miami Children’s Hospital’s pediatric neurologists for testing and I scheduled an appointment. In spite of my concerns she was walking fine, growing on track, and very independent, and it was then that Mimi started to read. I was able to easily engage her with flash cards and writing words out for her, and though she rarely made eye-to-eye contact with me and would sometimes “overfocus” on toys or objects to the point that she wouldn’t respond to her name when I called her, seeing her learn at such an accelerated pace for a 20-month-old put all of my worries on hold, and I cancelled the appointment. As the year wore on and she had more and more play-dates, her lack of social interaction became more apparent to me. She does “quirky” things with her toys, like laying down on her puzzles, or holding them up to her face for long periods of time, focusing on the parts of the toy instead of playing with them appropriately. Her complex sentences come from the scripts from her favorite TV shows-The Wonder Pets, Little Einsteins, and Mickey Mouse Clubhouse, and she recites the scripts more than engaging in any one to one conversation. She has mini-melt-downs whenever she hears particular sounds on some shows- on Blue’s Clues, whenever Steve screams “Mailllllllllllllll”, or on Little Einsteins when Leo or Quincy exclaims “I cannot believe it!!!”. And though she knows the words to ask us for help when she needs it, she seems unable to do so, and instead directs our hands to do whatever she needs done, like pushing the button on her iPhone or clicking the mouse on the computer. She stands in front of an object out of reach and names it, never pointing or making eye contact with us. All of these behaviors are very subtle and unless you spent a lot of time with her or knew that this was red-flag behavior, you wouldn’t think that any of this was out of the ordinary for a two and a half year old, especially since she does speak, clearly naming her toys and objects, singing songs, and making appropriate exclamations like “I’m gonna get you!’ when being chased or “that’s so funny!” when something amuses her. As she grows though, these differences will become more apparent to other children her age and if she doesn’t get the therapy she needs she could wind up being socially isolated.
We are still in the evaluation process, which we’re learning is a long, long, stressful road. Thankfully the stress is on us and not Mimi, since they assess her through structured play. So far she was evaluated by the neurologist and a speech/language pathologist who told us that although there is no speech deficit (considering that she knows hundreds of words and can speak in complex sentences), there is a clear deficit in her ability to use language in the way she needs to in order to have reciprocal spontaneous conversation- the key to developing socially. This is also indicated by her lack of eye contact which is necessary to read social cues and emotional expression. She also has issues with sensory development, indicated by her hyper-sensitivity to certain noises and her intolerance of any foods that aren’t bread-related. As we continue with the assessments, I am sure that they will pinpoint all of the areas of concern, and all in all, what is going to help her now is “frequent, intense, and structured therapy” – speech/language, occupational, and behavioral- as prescribed by her neurologist.
As you can imagine I’ve cried a river of tears, and getting a good night’s rest is impossible right now. Our minds, hearts, and souls have been spinning with the myriad of questions and emotions that can only come with finding out that your child has “a lifelong neurological disability”:
“Which therapy centers/schools/methods will be best for Mimi, and will she respond favorably? ”
“Will she lead a ‘normal’ life?”
“Will she be able to make and keep friends?”
“How will her disability impact Samantha?”
“Does Samantha have it too?” (One in ten siblings do, and just to be sure, we have an appointment with the neurologist in March to have her evaluated)
“Will she be able to live on her own and be happy?”
“She’s so much more vulnerable now- how can we protect her when we’re not there?”
“Will she be able to communicate with us if someone hurts her?”
“Will she be bullied or teased for being different, and how will we stop ourselves from beating the crap out of someone if they do?”
In spite of the emotional duress I am doing my best to stay focused and tap into as many resources as I can. Upon the suggestion of her neurologist I have scheduled appointments for a blood test tomorrow to determine if she has a gene for this (even though Ray and I had genetic testing done when I was pregnant and all was fine), and a brain MRI scheduled for February 10th to make sure that there is nothing else going on. Tomorrow we will also have her evaluated for occupational therapy. We have our intake appointment with UM-CARD on February 1st, where we will hopefully get the information we need to get the ball rolling on her therapies, i.e., where to go, available state resources, navigating insurance, and guidance, guidance, guidance. I have spoken to other two other moms so far about what their experience has been like, and gotten feedback and on the different courses of and places for therapy. I called South Miami Hospital, where Emilia and Samantha were born, to inquire about their Child Development Center which has programs of therapy, and learned that there is a 3-4 month wait to get started. The same holds true for Miami Children’s Hospital’s programs of therapy and I am told that I have to prepare myself for long wait lists because of such a high demand. The uncertainty and not knowing when and where we will get her started is the most uncomfortable thing about this situation, and until we get there, we are doing our best to focus on the good things, like
We got her diagnosed early, and this will make all of the difference in her ability to respond to therapy…
Mimi is happy and healthy, incredibly sweet, independent, and brilliant in her capacity to learn…
Mimi said “preschool is awesome”, quoting a line from and relating her experience to one of her favorite Wonder Pets episodes after we came home from the Speech and Language assessment…
She has already responded to a simple adjustment that Ray and I have made- instead of playing alongside her, we sit in front of her and bring her toys up to our faces, which has encouraged more eye contact from her, even when we’re not playing.
She now greets Samantha in the morning with “Hi Sammie!”, which completely warms our hearts.
Sammie, with her big belly, Fred Sanford-like walk (from the 70’s TV show Sanford & Son, lol), and contagious laugh is also happy and healthy…
Ray and I are in this together, focusing on being advocates for Mimi and getting her the best care that she can get so that she can be the best person she can be…
Because autism now affects one in a hundred fifty children, a heightened awareness has led to more programs being implemented to help those children affected by it.
There is a much greater tolerance and empathy for children with disabilities, and many schools have anti-bullying policies in place to protect them.
Yesterday I found a friend in the founder of momsreach.org- Lainie, has a seven-year-old daughter with ASD. I clicked with her right away and she has already comforted me by knowing that she has gone through this initial stressful stage and that her daughter is getting the help she needs.
Ray also has a friend whose son is autistic and she has also been a great support, providing us with resources that will help us on the journey. She suggested two books that I picked up yesterday about Asperger’s which I started to read and already am getting a better understanding of the disorder:
The Complete Guide to Asperger’s Syndrome by Tony Atwood
Look Me In The Eye, My Life with Asperger’s by John Elder Robison
What gives us the most strength is knowing how blessed we are that our two beautiful babies chose us to be their parents, and knowing in our hearts that we have the love, prayers, and support of our beautiful family and friends…thank you…
Tanya, Ray, Mimi, & Sammie